'Big Data' should have patient welfare at its heart

By European Alliance for Personalised Medicine xecutive Director Denis Horgan

'Big Data' is here and here to stay. We are sharing more and more information in more and more different ways and the trick, clearly, is how to use these data superhighways for the benefit of mankind.

One way to do that, in this era of fast-moving science and the advent of personalised medicine, is to put Europe’s 500 million potential patients across 28 EU member states at the heart of this incredible revolution.

It is now possible to network pretty much anything – ‘smart’ wearables that pass data back to hospitals while we are at home and pill-boxes that tell us that it’s time to take our medicines, are just a couple of examples in the field of health.

Gadgets that send back information are, of course, part of the gathering apparatus of Big Data – data that is stored, channeled and, theoretically at least, can be used for the greater good.

Big Data is merely one part of a revolution of technology and gadgetry that splits opinion: some people will tell you that a fridge that can tell us that we’re about to run out of milk and eggs is extremely useful, while others will more cynically offer the opinion that, yes, it’s very handy for the dairy that wants to sell you more of its products.

Not only that, but with mobile phones, laptops, credit cards, passports and even large-denomination banknotes easily tracked by Big Brother-style governments and individual hackers, the whole concept of all this technology can sometimes be a little scary. Well, when we actually think about as, in reality, we barely notice all this information that we allow to be tapped on a daily basis.

We are also so busy staring at screens in whatever shape or form – suffering from bad posture, getting fatter, losing our eyesight – that it is easy to forget that in the world of Big Data, objects are not the only answer. The patients are.

But there is an irony in the fact that many patients spend so much time looking online for information on their various ailments and conditions – or those of a family member - that some doctors find it easy to label them as “cyber-chondriacs”.

It is clear that patients, researchers and industry all need information. And there’s no doubt that there are ever-more new ways of collecting it. But to put patients at the heart of the Big data phenomenon, individuals, and especially those who share all that very private data about their health, should be in control of their own information, become empowered through it, and use it – ideally through one-time consent – to help themselves and others when it comes to health.

Obvious ways spring to mind – the sharing of clinical-trial data across borders due to many more rare diseases now being identified with, by definition, smaller patient groups, for example, and the usage of data that they have chosen for the benefit of research and development.

There are now so many ‘rare’ diseases – some 7,000 - defined in the US as those that each affect less than 200,000 people. As things stand, most doctors have very little chance of correctly diagnosing the condition – even in richer, better-resourced countries (such as the UK and US) correct diagnoses take on average between five-and-a-half and seven-and-a-half years.

Add to this the fact that one survey of eight rare diseases in Europe found that around 40% of patients’ first diagnosis was wrong. That figure is shocking and certainly in many cases leads to loss of quality of life and, in many cases, life itself.

This situation could be made a great deal better for patients if data on rarer diseases was collected, shared and analysed. This allows more information-flow with the result that diseases are identified earlier and new drugs can also be developed. This is not only the case with rare diseases, but the arena is certainly smaller and more focused.

Over-diagnosis, most notably in cancer, is also a major issue in modern-day health.

Many experts say that aggressive screening programmes often cause misdiagnoses – leading to unnecessary treatment and anxiety – as well as so-called false positive results, but these are not over-diagnoses.

The latter occur, for example, when a tiny breast cancer is found that would not grow large enough to even cause symptoms for let’s say, another ten years. The cancer is real enough, but poses no immediate danger. Yet this can lead to unnecessarily early treatment and, of course, that anxiety for the patient and her family.

Data on what is a real and present danger and what is not, needs to be shared and the knowledge to interpret it increased. Causing unnecessary suffering to the patient – who is at the centre of healthcare, or should be – is clearly to be avoided whenever possible.

Of course, the Brussels-based European Alliance for Personalised Medicine (EAPM) acknowledges that there are huge moral and ethical questions about collection, storage, sharing and use of these data. This must be done within robust frameworks that protect the patient but do not frustrate the need for scientists to keep finding new disease cures and better drugs and treatments.

These issues need to be solved and data cooperatives are one idea gaining ground that allows the freeing-up masses of knowledge yet keeps the data providers – the patients – in control of what they share, when they share it and for what purpose.

In any event, there is a wealth of data out there now, more than ever before and growing by the day. EAPM believes that we must remember that, in health, this information should revolve around, and give benefit to, the patient.

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